Chronicling the adventures of one amazing, funny, sweet, outrageous young lady, who happens to have CHARGE syndrome!

Sunday, March 8, 2009

Another March Break has Come and Gone

Random musings on March Break '09...

Well today is the last day of March Break. Kennedy had a fabulous week - the first weekend of March Break we had Taylor home all to ourselves for the weekend for the first time without her Mom & Dad. I had a ball being the doting Nan and Kennedy loved helping out with everything as the ever-loving Auntie. She helped me give her baths, feed her, hold her, change her bottom, play with her. It is so beautiful to see the two of them together. I am so proud of how responsible she is becoming.

On Monday, she began to go to theatre camp. She asked to go for the whole week so we signed her up and she went on her own each day. There were different themes for the days, such as 'Broadway Bound' and 'High School Musical'. She came home so happy and excited every day. It was not as fun for me as we usually have the whole week together and didn't this year but she's growing up, expanding her interests and I think it's great she wants to do other things.

We did catch a movie together on Tuesday night: Jonas Brothers 3D. It was a lot of fun; those boys have a LOT of energy. Kennedy loved it! Friday night, after theatre camp was done for the week, we had a girly spa & movie night, complete with a full massage, bubble bath, manicure, and movie. Oh yes, we also had fun playing 'Guitar Hero: World Tour' together. Graeme actually joined in for that. Kennedy's score beat ours almost everytime, no matter if she was on drums or guitar. She loves that game so much and is so cute to watch. She is her mother's daughter - loves the 80s music - we often hear, 'Eye of the Tiger' and 'Beat It' pounding away down there.

Yesterday (Saturday) was a cooking day, she wanted to make cheesecake so we spent the afternoon doing that. In the morning,though, we had to go out and do a few errands, one of which included going to Home Depot to pick up a small light switch. I wish I'd had my video camera because Kennedy began giving us a guided tour of Home Depot. She would walk us over to the kitchens and say, "This is the cupboard, these are some lovely drawers," etc...and would open them and point just like she was little Miss Saleslady. It was so adorable.

On another somewhat related topic, something she is doing a LOT of lately is asking us, "What will I do if I work here when I am older?" She does this at almost every new place we go; she has a real curiousity about working and having a job. She is very excited about this. We spend a lot of time talking to her about different responsibilities of different positions. She thinks she might like to work at the hospital where people register - you give them your Medicare card, they enter your info in the computer and then tell you which way you need to go to get to your desired destination. I think she'd be great at this (or whatever she sets her mind to). She certainly knows her way around the hospital and is excellent on the computer. Time will tell, I just want her to be happy in her life no matter what she does.

Last note about March Break '09 - K got a cheque for Xmas this year that had been sitting on a shelf in our kitchen for going on three months and we decided we better get it cashed. So Kennedy opened her very first bank account yesterday, learned all about getting an account, how much she could take out in one day, got her new bank card, selected her own PIN for the account, asked questions of the bank manager who set up the account, etc. It was happy and sad at the same time - happy to see her taking in the information, getting more independent, but sad because my baby is growing up!

Back to school tomorrow - I'm not scheduled to work tomorrow yet so that's a good thing as Kennedy's big brother, Kyle, is coming home from his high school trip to France at about 1:00am. She is excited to see him as am I - can't wait to go pick him up tonight, Kennedy will have to wait until the morning to see him, though as she does need to wake up for school!

Hope all of my readers had a great break or will have a great break if you haven't yet had it!

6 comments:

Wow! Sounds like she had a very great March break. She is such a smart girl and she is definitely growing up :O) She is very good at the computer as I have witnessed when I talk to her on facebook when she is on! Hope ya'll have a great week!

Oh Lisa... this post warmed my heart on so many levels!-So glad you got to spoil and love on Taylor for a whole weekend!-I LOVE that you are an 80's lady! :-) We are (especially my husband) total 80's fans, too!-Oh to be a fly on the wall in Home Depot that day!!!-Spa night sounds like TOO MUCH FUN! :-)-I just adore that Kennedy has interest in working... no surprise as she's such a go-getter. And the bank account... Oh my! Where has the time gone?! I felt a little twinge in my heart when I read about her desire to work and the bank account, so I can only imagine how you are feeling about your baby and all her independence! Proud and sad all at the same time! Let's go with proud... she's just AMAZING!!! Hope that "back to reality" after your break wasn't too painful!Kristi

can jsut see ehr shwoing u around imagine her at the hosp im picturing it now and so where would you like to go oh and dont fret if the drs take for ever thats what they r doing or if they were going the theatres shed say something to make the people laugh and stop worrying something liek what play r u seeing oh i can c it

where do you guys get the energy from ?? a busy week !! Managed to keep up to speed on facebook for some of this thank goodness...a girly spa night and baking what a great way to have mum and daughter time !!

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Today is...

Team Kennedy CIFC

What is CHARGE Syndrome?

CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.

Continued research is needed to help us understand the medical and developmental challenges facing individuals with CHARGE. Better understanding will lead the way to interventions, therapies and educational strategies which can help people with CHARGE syndrome overcome many of the obstacles in their lives.

One of the hidden features of CHARGE syndrome is the determination and strong character these children display.